Shaken, Not Deterred

Guest Post by -Leo Zanchettin Jr.  of Autism Blues 

See that picture? That’s my wife and my daughter (15) taking a walk. Oh, and our dog, Roxie. Do you know why I’m posting this picture? Not because I love these two (which, of course, I do), but because of how proud I am of my little girl. The fact that she is out on a walk shows how courageous she is.

You see, about four weeks ago, my daughter had a seizure. It was her first. Not a little tremor—a grand mal. You know, the kind where you’ve fallen to the floor convulsing, with your eyes wide open but seeing nothing. The kind where you can’t remember anything about it. The kind where you wake up as the paramedics are gently placing you on a stretcher and wheeling you into an ambulance. Terrifying stuff.

Then, ten days later, she had another one. The first one was in our house, but this one was out in public, at a food court. Again, it was a grand mal, and it lasted longer than the first one. Fortunately, I was there with her, so I knew to roll her onto her side, cradle her head, and wait it out. Again, she woke up, disoriented, to emergency personnel hovering around her.

So what does this have to do with the picture up there? Everything. 

Overcoming “What If.”

Events like these would be traumatic for any adolescent girl; they can be positively paralyzing for a girl with ASD and anxiety disorder. The randomness of the seizures, the lack of memory, the waking up surrounded by strangers—it’s all so upsetting. The largest question that looms in her mind now is “What if?” What if I have another one? What if Mom and Dad aren’t around? What if it happens in front of my friends?

She’s on anticonvulsants now, and she hasn’t had a seizure in two weeks, but that doesn’t matter. The anxiety is so big, and the autistic tendency to perseverate is so strong, that the mere possibility of another event has kept her pretty much homebound ever since. She even missed an appointment with her counselor, whom she really likes.

Now do you see why this picture is so precious to me? Katie and I have convinced her that she needs to start getting out. We’re starting slowly, having her join us as we walk the dog in the mornings. And she’s doing it! She’s walking, she’s talking about everyday stuff, and she’s not perseverating over the seizures. 

(The walking stick? That’s because she has mild scoliosis, and it helps her posture.)

Different Drums.

Now take a look at this picture:

Do you see that plush doll in her right hand? That’s Phantump, one of her favorite Pokémon characters. She is rarely separated from this creature, and when she is, she’s holding another one of the more than 100 she has collected over the years. They are her security blanket. They bring her comfort. They help her bridge the gap between the fantasy world she so enjoys and the real world, which is fraught with challenges and dangers.

So there’s my daughter, out in public with a walking stick and a plush Pokémon. While most girls her age are swooning over boys, preparing for their learner’s permit, and paying close attention to their appearance, here is my girl, walking to the beat of her own drum. She’s fighting her fears. She’s facing down her anxieties. She’s pushing through some things no fifteen-year-old should have to face. And she’s still standing.

There was a time when I’d object to the plush doll. “You’re a young woman now. For God’s sake, leave that thing behind!” There was a time when I’d try to force her to push through her fears more quickly than she was ready to do—usually to disastrous results. There was a time when I knew pretty much what I wanted her (and all my kids) to be, without paying too close attention to her unique personality. But if walking this autism path with my kids has taught me anything, it’s to throw away all of my expectations and to not care about how other people look at them. Those concerns were more about me than the kids, anyway. 

So march on, girl! I don’t care if you need to take five Pokémon with you. I don’t care if you choose one of the most ornate, obvious, obnoxious walking sticks possible. Do whatever you need to do. Just keep moving forward. Today, it’s a walk with Mom, Dad, and Roxie. Next Sunday, it may be joining the whole family at Mass. Or maybe not. It doesn’t matter. Take it one step at a time, and we’ll be right there with you.

These pictures, and this story, have been posted with the kind permission of my daughter (and, of course, my beautiful wife, Katie).

Leo is one of my favorite autism dads. He also runs a blog and a Facebook Community called "Autism Blues". 

Leo and his wife Katie live in Maryland with their six children, ages 7 to 16, all of whom are on the autism spectrum.  Yes. You read that right! Six children on the spectrum! I am truly inspired by their humor and grace as they parent their six children.

Autism -Box of Chocolates

Sister-friend, Autism Mama ~Elena

Autism “life is like a box of chocolates. You never know what you’re gonna get.”  Will it be a pleasant day? Will I be able to get my chores done, exercise, write, go to the market?  Will the whole world be shot to hell in a hand basket by just saying one thing, that sets off an explosion that will last for hours, or maybe even days? Will I get one of those phone calls, that makes my heart start racing? Autism parents all know that feeling when the school's number is on the caller i.d.

I can feel my summer depression setting in. I thought with Red living away and being busy working; I would be able to avoid it this year. Silly girl. I should know by now, never to get too comfortable with life in the easier lane.

With Red gone, issues with Blue are bubbling to the surface.  He started off summer with a bang of a meltdown which essentially lasted three days. And by start off, I mean, the day that school was out. Bam!

One minute we are shopping, laughing and having a great conversation. He met me in TJMaxx after SAT tutoring, which was in the same shopping center. We were picking out girly gifts for my god-daughter.  He talked about how much he enjoyed spending time with her just the week before. "She loves me, mom. I think she looks at me like, kind of a big brother."

Moments later, we are in my car when I apparently said the wrong thing. He went from zero to one hundred in nothing flat. He was angry and decided he could no longer be in the same car with me. He got out of my car and walked, at night, in the rain, 2 miles to get home.  He could not be in the same car as the woman who chose, "tonight of all nights, the night before the SAT," to correct him for yanking his earbuds out of his ears. I had no right to open my big mouth about earbuds that I have replaced dozens of times, because somehow, they keep getting broken. It has nothing to do with yanking them by the cord out his of ears. They just keep shorting out for some strange reason.

Of course, it was his choice to get out of the car, but everything that happened that night was all my fault, and of course, he was furious with me about it all ..for days!

The past month of school has been full of stress with the end of his 11th-grade year. He had AP Exams, State Testing, and the SAT on top of his regular class projects and final exams.  In fact, the next day after the epic meltdown, he was scheduled to take the SAT for the 2nd time.  I'm sure this was a major contributor to the anxiety which sparked the outburst. (And No...he did not end up taking it the SAT the next morning. Again...all my fault.)

I was steaming mad about all of the expensive tutoring we paid for to help him with the test, not to mention, paying for the test itself, that he now refused to take. I couldn't push him into doing it. That would just be another disaster.  Anything I said or did for the rest of that entire weekend, added fuel to the fire. 

He has had an incredible year of social success at school. He developed some wonderful relationships with friends, both male, and female.  The females especially have been a great source of strength and comfort.  They give out the best hugs when he is upset.

He also has developed a mentor network at school. His Computer Science teacher who is also on the spectrum, is a wonderful resource that he could access daily. He has also basically become friends with his old Science teacher, who is now his Club Sponsor. She is quite familiar with autism because she is married to a man with Aspergers. She also has a brother with autism.  In other words, he has created a substantial support system that suddenly, he will not have daily access to now that summer is starting
.
So, let's add all of the pressure from the end of school, to the sudden absence of his support network, then add a splash of SAT testing, and wham! There you have it! The makings of an epic meltdown. 

I remember that feeling in high school when school was out for the summer, I wouldn't  have easy access to my friends. For one thing, I usually worked, and most summers I worked full-time. I loved the money, but I hated the time it took away from hanging out with my friends. It felt like I was going through withdrawals from them. So, I get it. For him, these feelings are intensified as everything is with autism, especially social relationships.

At this point, I can not say, or do anything right. I can not parent. I can not guide. I can not suggest.  I can not even listen, without succumbing to the urge to say something, which will ultimately be the absolute worst thing anyone in the history of the world, could say.  I’m screwed! I feel purposeless, other than occasionally handing out money and providing transportation. And apparently, I can’t even provide transportation without the world nearly coming to an end.

Simple conversations between just the two of us are a strain, to say the least.  A conversation where the two of us could get to the root of our communication problems, would be impossible. We decided it would be best for me to sit down with him and his therapist so that we could hear one another. I needed to find out what he wants from me at this point because it feels like he doesn’t want anything. Yet, he makes a point of telling me that I’m not being supportive and understanding. I’m like, how supportive can I be when you’re always so angry with me?

Through our session with his therapist, I discovered that when he is at school working with peers, teachers and adult mentors, he feels successful and more adult-like and independent. Somehow that all goes away when he comes home and has to be reminded what to do. It makes him feel less powerful and in control. And he loves control! In fact in the middle of one of his meltdowns recently he told me, "I hate limits!" Of course, he probably feels more limits when he is here with us than when he's away from us. That's only natural, right?
I decided that I need to find ways to recreate some of the autonomy that he has at school. I need to give him more of a sense of control so that he can feel more independent.  He needs transportation from me, but at the same time, he probably hates the fact that he needs it. Yet, the prospects of driving are a little nerve racking to say the least. He says he wants to work, but going through the process of actually making that happen, feels overwhelming to him.

I decided it is time to add to my village. When you can't do everything yourself, find someone who is better at it. I've decided to hire a replacement mom. Haha! I wish! Actually, through my contacts in our school district,  I was able to find and hire a Job Coach who will work with him privately. It's cheaper than sending him to a camp or a social skills group that would help him to gain these skills.

Every attempt I have taken to help him look for a job or plan his time this summer has been met with disdain and the attitude of I have no idea what the hell I’m talking about. The value of him working with someone whom he will cooperate fully, is priceless.

The Job Coach will help him write a resume,  go through job application process, and work on interview skills. She will also help him look into some volunteer opportunities to help fill his time and maybe even work with him to get the ball rolling with his driving instruction through the driving school.

I believe there is nothing like the feeling you get from being a leader and doing something to help others. I hope that adding some opportunities for success and structure to his days, will be good for his mood.  The less time he spends in this house with me, the better for all us. He's happier when he's accomplishing something.

At this point in his life, I have to step back and let his support network help transition him into adulthood. It has been proven in the past with his brother, Red.  It truly does take a village. And sometimes, the best way to solve the problem is to take yourself out of the equation. 

Men and Guns

In the wake of the Orlando shooting a few days ago, social media has been full of sorrow, ranting, anger, arguing and so much more. I usually reserve my fighting energy for the battles right here in my home, trying to raise these children. I fight for services for them and their education. With what I have left, I write. I hope that my writing helps other parents to be inspired to keep fighting for their children. I go out into the world and try to touch a life in some way, whether that be helping a neighbor by picking up her children, or taking them a gallon of milk when she is sick. Babysitting for a single-mother friend, who doesn't have family support. I will give a smile, a compliment or encouragement to a complete stranger.

After so many were killed once again,  by a madman with a gun/or guns, I've been feeling helpless, depressed, sad and sometimes even angry, especially, when politicians start their rhetoric and pontificating.  Nothing changes.

Then I read this, and I knew I had to share it with my audience. It captures the feelings of helplessness that a mother feels when we see these things happening in our world. We want to protect our children, but we are afraid that maybe we can't.

The following post was written as a Facebook Status by my friend Kendra Norton-Qualls. Kendra is a friend and fellow autism mom. We have a kindred spirit kind of connection. She is an artist with words.

I wish men knew what it felt like
to hold a life inside of you 
for months and months
and months 
to have that life be dependent on you
for e v e r y t h i n g
this is a man's world is it not?
did I get that wrong?
well
where the fuck are they??
why don't they lead?
do they know how?
9 months is too damn long
do you know what it feels like
to carry a LIFE - for months on end 
to have your whole body change 
your emotions - change
your perspective - change
your life - change
and then to watch that life
grow and learn and mature
to have that beautiful blessed miracle 
be snatched brutally from this earth 
because MEN AND THEIR FUCKING GUNS!!!
well I don't (thank the goddesses)
but too many mothers do
way too many.
how do you receive a text
where your child is trapped in a bathroom
because a man and a gun
and you can't save him
you can't save him
you can't save that life
that you held for months
that you nurtured and cared for
you can't save your miracle 
because men and their guns
sometimes I don't like y'all (men)
sometimes I don't wanna be compassionate 
or understanding 
or empafuckingthetic
sometimes I have little to no respect
because most times you are weak
demonstratively weak
before you start to argue
look at our "man's world"
ask yourself who is the glue in your own life
I bet it's a woman
shit we do so much
SHIT!!
do we not populate the fucking planet 
do we not give you love
over and over and over and over...
who is your first teacher in life???
why do you ignore our cries??
what are you reaching for??
it is fair to hold you accountable 
men
it is fair
fix your fucking mess
you dominate the business world, the financial world and the political world
the world of weapons
the world of war
dominated by men
fucking lead or get the fuck out the way
9 months is too damn long!!!!!!
I'm so upset. 
I don't care if this is an unfair rant
y'all are unfair.
after Sandy Hook and nothing happened
nothing changed
y'all just went on
where were your VOICES!! Of outcry? Of disgust? where are they now?
Is this what male leadership is?
A world where we give birth to life
and then y'all take it away???
What is wrong with you?
Is it our fault? 
Is this burden to be laid at our feet as well? 
(shyt. 😞 we do so much)
No mother who has lost her baby, whether our uterus birthed that baby or not
No mother cares about your empty ass thoughts and prayers!!!
We want our babies back.
how come you're so good at sweating us for sex
but not sweating your fellow man for peace?????
I swear sometimes I don't believe in you anymore. 
I wanna take my own boys far far away
and save them
save them from this world of "men"

~Kendra Norton-Qualls 

I felt compelled to share this with you. However, I still won't argue about it. When Kendra speaks of "men" of course, she doesn't mean "all men." She is married to a pretty awesome man and has a couple of young men that she's raising.  For that matter ...I love and want to protect the young men that I have raised. You know who she's talking about ...and so do I. 

OMG! It's Summer?

Subconsciously, I was trying not to think about the fact that summer is staring me in the face until the subject came up in therapy.

"Your summer will be very different from years past. Have you thought about how that will look for you and what you want to do?"

Me? Do? Summer? I'm not used to thinking about what I am going to do for the summer. It's usually all about what am I going to do with and for the boys. What activities and camps will I find for them? How much more driving will I have to do in this Texas heat? How will I keep them entertained and from killing each other or being kicked out of all of the city pools like in this blog ~"Down Dog."

Too much togetherness has never been good for our family's mental health. Summers have been the bain of my existence since the kids have been in adolescence. I have come to loathe what used to be one of my favorite seasons. It has become a time when I get more anxious, sad and depressed.

Usually this time of year, I'm visiting my doctor's office in a panic that my anti-anxiety/depressant isn't working anymore. Increase the dose! Please! I don't think I can make it through the summer without someone being seriously injured. 

If you have followed my blog for a while, you may have read some of our summer stories. "Lost My Happy" and "Very Aspergery Day" (which was hilarious, in a painful kind of way) are just a couple of them.

Last summer was definitely no "Bed of Roses." Red's behavior was at an all time high of suckiness. I don't even want to think about all of the details.

This summer will be divergent from the norm for us. For one, Red has moved out of the house, and I am no longer responsible for entertaining him. Can I get a hallelujah? He has arranged for his schedule to be very busy for the summer (key word here -HE arranged). He will be working an average of 25 hours a week or more. Work will be followed by working out at the gym where he is employed.  The group home will be providing his transportation to work so ...YAY ME!

When Red is busy and has a structured schedule, his behavior and anxiety are so much better. It gives his mind less time to wander and worry about all of the "what if's" of life.

Exactly what Blue will be doing is still up in the air. Why? Because he is 17 and no longer allows me to plan his life. I know for sure he will be taking driving lessons, and he will work on his required parent taught"driving hours" to get his license. Only, I won't be the parent teaching him. We will have to hire a "parent" because we would end up killing each other. He and his father are like fire and gasoline these days. He will also be taking a class through our local community college.

He says he wants to get a job, although he has yet to look for one. And who am I to try to prod him along? I would like very much for him to do some traveling ...without me. However, I have to get him to agree and figure out if and when he will be working before I can plan anything with or for him. So yeah. Good times. 

As for me, my plan is to take a bit of a break from the blog. I will check in every once in a while with a quick update. However, I want to use the majority of my creative energy on some other projects

Many of my readers have been asking me to write a book based on this blog. I would like to focus on that.  I've been writing this blog for seven years, so figuring out how to dissect it and give a hindsight perspective will be a major project.  If you know of any editors or publishers who may be interested in helping me get my stories into a book, please feel free to contact me. (wesleyweave@gmail.com)  Seriously! Please! Help!!! I am called to do this, but overwhelmed by the idea at the same time.

In the meantime, I hope to open up the blog to some of my readers, fellow autism parents and adults or even teens on the spectrum to share their stories.  If you have a story you would like to share or know someone who does; please contact me. I will be glad to help you polish it.

The Pacific Ocean in Kona, Hawaii

For the first time in 20 years, I plan to focus on self-care this summer. I will be exercising, traveling, writing and trying to be creative. I hope to put my feet in as many bodies of water as I possibly can. I will also be working on a few home improvement projects. My home has been severely neglected for the past few years.

My husband and I already have an exciting trip planned. Of course, I only have a general idea of what I will do with my mother and Blue while we're gone.  I find that I still get an extra dose of anxiety planning any get-away because there are usually so many details to work out. I'm trying to get over it, which is, of course, easier said than done.

This freedom is a strange, untethered feeling. It's kind of like I'm blowing in the wind, but I will try to make the best of it.

I will be in touch. I'm a Facebook addict, so there will always be updates there.

Love and blessings,

~Karen 

The Art of Conversation

Simple conversations can be agonizing in my house. In fact, I am becoming less and less of a fan of talking. I would rather write or just be -alone, in silence or listening to the birds sing, or the sound of the waves crashing on a beach, where I am alone. Did I say, alone?

Lately, trying to have a conversation with my 17-year-old feels like a trip to the gynecologist. You just don't want to go there.

Whoever said "third time is a charm" is a mother sucking liar. I am going through the age of seventeen for the third time raising my boys, and it is anything but -charming.  There are layers and layers of suckiness, emotions, and anxiety that comes from all of the stressors for Blue right now. The worst is how much he thinks he doesn't need his parents anymore. In fact, having us around is a major inconvenience. The only problem with this is IT's OUR HOUSE!

I realize that seventeen is not the only sucky age, especially for those on the autism spectrum. This is not my first time at the rodeo. I've been through all of the ages with my boys, including my atypical son who is now 27 or is he 28? I can't keep up.  He was not much easier as know-it-all teen.  He is just starting to get the fact that we are and always have been, one hundred percent in his corner.  He is becoming a much more responsible adult. In fact, I must congratulate him for finally earning his degree in Computer Science a few weeks ago.  I didn't believe it until I saw the degree in writing!

So I get it. It's only natural to go through this right of passage. Seventeen was when I told my mom that I would longer go along with her religion of choice for us. I would not answer to a congregation of people and the elders about how I was going to live my life.  It's almost like a teen's job to want to be nothing like their parents during this time in their lives. Of course they resent the control parents have over them.

By seventeen, you want to break away and be your own person -an individual, with thoughts and feelings, that are separate from your family. You don't want guidance or opinions from your parents. After all, we're completely clueless, right?

As much as they can't stand us (parents) being around, they can't completely breakaway because they still need a roof over their heads, and rides, and money. Subsequently, they resent our authority.
They want to be adults. They think they know more than we parents could ever know. After all, they didn't even teach us the kind of things that they're learning now in school, way back in the day -you know in ancient times.

There is an easy solution to not being around us.  GET OUT! And I left out the expletive. 

I get it; you're practically an adult, and yet there is fear all of the responsibility that comes along adulthood. There is a ton of social pressure from peers. It may be the first time you're experiencing love, and no one in the history of the world has felt the kind of love that you're feeling right now ...in the 11th grade.

Do I dare even mention those sexual desires and all of the complications that are helluva confusing? Everyone is talking about sex at school, all.the.time. You think everyone has done it except you. ( Except you know most of them are lying, right?)

Today's kids have easy access to media and anything they ever wanted to know about anything via the internet. Only, they don't realize there are nuances to relationships and sex that media can NEVER teach.

Now, let's add Aspergers to the mix, which produces a whole other series of social deficits that are too intricate and complicated to wrap your head around. They have this unique way of seeing the world and sometimes it's hard to figure out why everyone else doesn't see things the exact way they do. People just don't get it and parents, the people who should get it, are the worst offenders.

There is a ton of pressure with school. Grades are beginning to get serious as they can affect what college you're accepted. They have to start thinking about college; possibly going away. There are AP exams, SAT's and college applications. The list of pressures is infinite.

As a parent of a seventeen-year-old, I have to face once again, that I am no longer the mom; the teacher of lessons; the preventer of falling over a cliff. I have now become The Consulting Parent. I wrote about this two years ago, so you think by now I would get it by now.

So now more than ever, when we try to help our son or teach him something, he takes it as a personal affront; like what we are telling him is that he is all wrong, and we are right.  Or as he puts it, "you're treating me like I'm stupid." We are just trying to help him. We would like to give him the benefit of our life experience. We are parenting. We would like to spare him some grief, maybe prevent him from making some of the mistakes that we made. Unfortunately, it feels like the teaching window of time for this kid has expired. Any guiding that we do for now is met with disdain and anger.

In recent weeks, I've been told in every which way but loose, that I have no idea what I'm doing anymore.  He is different than his brothers, and we're treating him like he doesn't know anything. He doesn't need our help.  And then in the next breath I am told,"You should know what I need by now! You should know what I'm thinking! Everyone understands me better than you!" He doesn't need our advice and our teaching moments! "I just need for you to listen to me! I need your understanding!"

I am eternally grateful for the adult mentors and friends in his life, who he believes do understand him. He can talk to them so much easier than me or his father. I am especially thankful for the special friend who he believes has given him a sense of humor and sarcasm. I mean, there's no way he got that from me. 

I ran into some old friends a few weeks ago. This family has a daughter Blue's age. She and Blue were friends in Elementary school. In fact, she would sometimes be the only girl at his birthday parties. I was kind of staring at them from across the room in the restaurant, mesmerized by how beautiful and poised this young lady is now. When they finished eating, her mom popped over to our table to say hello. She told me that her gorgeous daughter just told her that apparently, she "knows nothing about anything anymore." She said this with a forced smile on her face, which I read as she was about ready to strangle her lovely child.

In recent weeks, simple conversations turn into anger-filled rages so fast it gives me whiplash. Anxiety is a big part of it. However, I leave these conversations with hurt feelings and sometimes even tears. That brutal honesty that those with Aspergers have can sometimes leave you with bruises.

When a person with anxiety, stress, and anger is feeling out of control, they can sometimes project their emotions to whoever happens to be in the line of fire. Especially, a mother who they know loves them unconditionally. They can make us feel like we are the problem. I've been there done that with Red and I still feel the sting of PTSD from years of it. I feel myself tensing up, stomach turning in knots when I think that Blue is getting ready to get started.

When you're being attacked by words and barraged with yelling, sometimes you start to believe that you actually are indeed the one with the problem or at least a contributor. The truth is that I am usually just trying to survive with a little bit of sanity intact. As mothers, we are usually trying to help however we can, even when we can't.

I know that I'm not perfect and I often find myself engaging in an argument that I had no intention of being a part of, but I can easily get sucked in.   So, I did some research and even talked to some adults that I know with Aspergers to help me process what I have been experiencing with Blue and our conversations. I wanted to see what if anything, I could do differently.

As a result of my research and examining some of our recent conversations, I came up with  some guidelines and strategies to help me communicate with my Aspie:

• Ask in the beginning of the conversation, "What would you like from me?  Do you want me to just listen or do you want my advice? More than likely they don't want your advice. Ask, do you even want a response from me? 
• If what he wants to just have a monolog (to information dump, on a topic of interest, or he just wants me to listen) where he is the only one talking  -I will give a time limit in the beginning. The amount of time depends on how close I think I am to snapping.  
• When monolog turns into a personal attack where he is blaming me, shaming or making me feel bad -I have the right to *walk away or ask him to go take a *walk until he can calm down and speak to me with basic human decency.

*Walking brings down cortisol levels almost instantly. You will feel better.

• Criteria for ending the conversation 

-Do I feel bullied?

-How would I feel if this were a friend talking to me like this?

-Do I feel uncomfortable?

-Would I accept this coming from anyone else?

-Would one of his friends or colleagues accept his talking to them in this manner? -If the answer is no. I am not doing him any favors by allowing him to speak that way to me. Lord knows, I'm not doing myself any favors.

• I realize that sometimes, I feel compelled to teach him something. Even though he's made it pointed clear that he does not want to be "taught" by us anymore. I often find myself caught up in this trap especially...

-when he starts making assertions that I know are not factual as if they are indeed fact. I
-when he starts using words or language that I consider offensive or unacceptable. I want to stop him right then and there and correct him.
-This never works when he is already on a roll but as his mother, I get caught up in the fact that he will go out into the world and people will think he was raised by a pack of wolves.

• What may work better is if I could just wait and listen when he is talking. Perhaps, I can take notes while I continue listening and give him feedback later when he's in a more calm, accepting  mood. As if that ever happens. This will give me something to do with that nervous energy with which may otherwise lead me to whack him in the mouth or wring his neck.

• I have to remind myself that I am probably more in control than he is; keyword -probably and I should try to be patient. I'm trying so hard, I hope it doesn't kill me. 

I will be attempting to implement these strategies in the coming weeks. Lord knows, summer is almost here, which means a lot more togetherness. I hope we will both make it out alive.

Dear Prince

Sitting alone in my room on that Thursday morning, April 21st, I read the news...
What? 
How can people be so cruel to perpetuate such a rumor? 
That's ridiculous! 
Nope. I don't believe it. Just No.
I am a hopeless optimist. 
I never want to believe the worst case scenario. 
I don't jump onto every bandwagon on social media, especially when it's something negative.  
I don't believe it until you prove it. 

Moments later on CNN there is confirmation:
The fatality at Paisley Park was indeed the artist who played the soundtrack of my youth. 
At the age of fifty-seven-
Just six years older than me-
Prince is gone.
I sit there on the couch in shock, 
trying to process what feels like bad dream.  
I can not move.
I can not carry on with my day. 
I am numb. 

It's not the first time that I've been alone in my room with Prince, but this time eerily different.
~~~~~~~~~

Photo lifted from ABC News.com

That time when you were a teenage girl - sneaking around to do everything that your mother didn't want you to do. She didn't approve of much. As a single mother, she was trying to the best of her ability to keep you on the right path, close to God and all of that.

Your loving mother decided that your religion was Jehovah's Witness when you were in the second grade, not long after your father left, and before you were old enough to have any choice in the matter.  You think that part of her reason was that she needed the support system of the "Witnesses" being a newly single mother in L.A. without any family. You did meet friends who became like family.  They were the nicest people ever.

It was cool until you realized that you had to go to those freaking meetings three times a week and field service on Saturdays. You would miss all of your favorite t.v. shows on Tuesday and Thursday nights. There were no VCRs at the time.

On Saturday mornings, when you wanted to sleep in and watch cartoons, you had to get up to knock on people's doors to pass out "Watchtower" and "Awake" magazines for a ten cent donation.  Excuse me I'm knocking on your door, disturbing your peace to bring you the word of God for the bargain price of ten cents. It was torture! You hated it, but you were a good girl and did as you were told.

When you were hitting adolescence and started having those feelings about boys, like an average teenage girl; only you weren't allowed to date. It was against the rules. You were drilled with, dating leads to making out, heavy petting and pre-marital sex. You weren't allowed to do a lot of things; no birthday celebrations; no Halloween; no freakin Christmas.  However, your strong will would find a way to do whatever it was that you wanted to do.

Somehow you listened to all of that Prince music and learned the words by heart, even if you didn't completely understand what they meant. Who cares really? The music was a funky, hot combination of soul, punk, and rock, with a side order of naughtiness.

That time when the album, "Dirty Mind" came out. It was unlike anything you had ever heard before. It was R & B with a splash of New Wave. You were seriously into New Wave at the time; the Go-Go's, The Cars, Soft Cell, Devo, the B-52's.  It was your first year of high school. You finally had the first boyfriend that you were NOT allowed to have. The "Witnesses" were right. It did lead to a little bit of making out, but that's about as far as you allowed it to go.

All of the boys in high school were talking about that song, "Head." You thought the idea of "Head" was OMG gross! After all, you were only 15 and still a virgin. The fact that you were grossed out by the sexual act did not stop you from singing every single lyric and shaking your ass to every single beat. I mean ...how could you not? From "When you were Mine" to "Party Up" there was no reprieve. You simply had to dance.

I don't know how you managed to listen to the entire album over and over again, especially in your mother's house, but there you were alone in your room, with Prince. 

You learned every song, in order of play and there was no other way to listen to it. You listened to the entire album over and over again, loving every song more than the last. You particularly loved the transition between "Head" and "Sister;" how it almost seemed like a continuation of the same song, but it was indeed, another song altogether. It would be years before you realized the meaning behind "Sister."

OMG and then there was that time when Purple Rain the movie came out! It was 1984. By that time, you were seventeen, almost eighteen. You pretty much told your mother you were done with the whole, judgmental, controlling, Jehovah's Witness religion. You were done with sneaking around to do all of the things you wanted to do. You were just being honest with her.  She was a bit shocked at first. She gave you that look like, I don't know who you think you are, but she ultimately accepted your truth.

You had friends who were boys and one that one boy who was more than a friend.  You were knee deep in rebellion and -I'm gonna do whatever the hell I want to do. So of course, you went to see "Purple Rain" the movie more than once. In time, you knew all of the lines and of course all of the songs. You wanted to be Vanity, the girl who got the sexy boy. Of course, you weren't even close to being the sexiness that oozed from every pore of Vanity's body, while Prince was drinking it up.

Then there was that time when you got to see your boy live at the "Purple Rain" concert!  You had a special friend; he was like a brother to you, only nicer.  He took you to that concert at the Long Beach Arena. It was like living a dream, getting to see Prince dance and sing live on stage. You were taken aback by how loud everything was. There was no adjusting the volume to Prince's screams. It was an experience you would never forget. That dude who was like your brother would remain a part of your life thirty-something years later even though you would come to live miles apart.

Let's not forget all of those times when you were hitting house parties and the clubs in L.A., dancing to songs like "Erotic City," "Housequake," "D.M.S.R."  "Sexy MF."  There were so many songs, so many parties, and so many clubs where you danced into the night.  Your favorite spots? The Red Onion on Wilshire Boulevared and the Bitten Apple, further west on Wilshire. There was always somebody there who knew your name, and if they didn't know your name when you got there, they would by the time you left.

There were many times and many people that each of those Prince songs would always remind you of, even all these years later.  Until this day, when you hear "Adore" and "The Most Beautiful Girl in the World," it brings back the kind of memories that a married woman is not supposed to talk about.

~~~~~~~~
It's afternoon now. I've been dancing all day to all of the songs. When I'm dancing somehow, I'm not sad. I am celebrating his life. I am celebrating my life in all of its different stages. Each Prince song carries with it a memory of someone --of happy, carefree times before I grew up and had to start taking life seriously. On this day, when my sweet Prince said his final goodbye, I took a much-needed break from my reality.

Hours go by. I can't shake it off. I can not let it go.  I can't quite figure out why this is hitting me so hard. I'm like a love sick teenager, except I'm a 51 year-old-woman, a mother, a wife. 

My son comes home from school and into my room. He begins talking about his day; politics and everything that's wrong in the world. He jars me back to reality. Hey, wake up girl! You have a son with autism who loves to hear himself talk. It's his way of processing his thoughts. He has no idea that you are currently living in another space and time. 

After a few minutes, I stop him because he wants a response to the question, "Who will you vote for in the upcoming election? I mean, how can you trust Hillary?"

I start my automated response, "How can we trust anyone in politics? Obama is probably the last President I will ever trust, and he wasn't perfect. Close, but not perfect."

That was not good enough. He starts going on about the candidates on the other side. I could not give less of a flying f*#% at the moment.  Suddenly, I interrupt, "I'm sorry. I can't process anything that you're saying right now. You know who Prince is, right? Well, he died today, and I'm having kind of a hard time with it."

He apologizes, but then he keeps talking. I turn the music up and start cleaning out my closet. After all, I am not entitled to completely lose a day of productivity. I am an adult! 

My son says "Are you trying to tell me that you want me to leave your room?" I think to myself, Hallelujah! Great reading my social cues! Yes. Would you please leave me in my Prince world?

Days go by. I am still sad. It feels like I've lost a close, friend unexpectedly. I can't quite grasp why I'm so sad and lack of ability to just move on with life.

I listen to his music every chance I get. I'm furiously looking up lyrics and reading articles about him, trying to find the deeper meaning behind his body of work.

I'm stunned when I start reading an article and find out that "Sister" is actually about incest. How did I not know that when I was 15? Oh yeah.  I was pretty clueless. I thought it was just about his sister who was "loose" and liked to sleep around. Duh! 

I start mapping through his life -looking at every video I can find; reading everything I can about him. I read about him becoming a Jehovah's Witness, which I always thought was strange. As I examine his life, I find so much irony and paradox in this choice. How is it possible, that the man who was a key part of my rebellious youth, actually came to believe and follow the very controlling, extremely conservative religion that I rebelled from?

I wonder, How could they have accepted his travel around the world, hanging out with other celebrities and even becoming heavily involved in social causes? Maybe because he was Prince and probably giving them a crapload of money in donations, they let him do whatever he wanted to do.

"Prince often vanished from the congregation for long periods, apparently while he was traveling, and his fellow congregants didn't seem to begrudge him, acknowledging the effect his musical gifts had on the broader world. They also said he apparently visited other Kingdom Halls when he was on the road." Los Angeles Times,  April 24, 2016

My memory of Jehovah's witnesses was that they attempted to restrict who their members were allowed to associate with. It's one of the reasons I left. I had friends from all walks of life, and I no longer wanted to have to answer to The Elders about who my friends were and what I was or was not doing with them. There was a judgmental overtone about "people in the world -with their worldly ways" that I hated. Prince would have been one of them at the time.

In "The Truth" (which is what witnesses call their belief system) they only wanted you to associate with others who shared the same belief system.  I found it to be cultish. They wanted you all in. So much so, that I wanted nothing more than all out.

Perhaps the paradox of Prince's decision to become a Jehovah's witness is not for those of us outisde of his world to understand. His sprirituality, his relationship with God is really none of our business. 

Whatever the case may be, the world was better off because of Prince and his rebellious days making his special genre of music. He made us stop whatever we were doing and dance. He opened our eyes to acceptance and difference, of being whoever you choose to be, without asking the world for permission. 

I felt compelled to write this story. At first, it wasn't coming out right. I wasn't really making any sense. It wasn't cohesive. I went through all of the typical artist/writer feelings. Who cares what you think or feel. No one will read this. Your blog is not about music or celebrity. As I kept reading about Prince, how hard he worked and he NEVER gave up on his art. He created every single day, not thinking about the outcome or who would approve of his work. That was his final gift to me. 

Thank you, sweet Prince.  
You  live in my heart always. 
Thank you for the inspiration. 
Thank you for the music. 
I love you. 
Always


Another Artist...

Adult Transition for Mom

The process of raising my boys feels like I’ve already done the work of a lifetime. Red is now twenty-years-old and Blue is seventeen.  I think maybe I should just retire now. I deserve it!  (I  fantasize about this ...a lot.) The reality is  the job of raising my children is changing, but it’s not over. It will NEVER be completely over, no matter how much I wish...

(Excuse me for a moment while I cry into my glass of wine.)

Okay,  I'm back. 

We are all at a point in our lives where we are going through a transition. 

Red is out of the house and though he has made tremendous progress, (in case you missed it, read about it here in the popular, "I Can Not Die" post) I am still his nervous habit. When he gets anxious (which is often) he calls me. This can mean way too many phone calls to count on any given day. Even deflecting, turning the cell on silent and not answering each and every call, is still an energy drain. He's like a robocaller,  dialing one number to the next between the house, my cell, his dad’s phone, his brother's phone ...it just goes on and on and on.
I think he wants to make sure he is ALWAYS on my mind. Can we say -attention seeking? 

As he transitions into becoming a responsible adult, I try to be less of a presence in his life. I  try to work more behind the scenes. I don’t attend every meeting and appointment. It seems to help him speak up more when I am not there to be an extension of his own brain.  He may not be a full-time job for me anymore, but he is still a piece of work!

Blue will be a senior next year and totally opposite of Red, he is already working on becoming independent. He wants me as far into the background of his life as possible! I think I may actually talk to him less than his older brother, even though we live in the same house. He entertains himself.  More often lately, he calls his friends for his lengthy discussions about how the world should work, according to Blue. Score for me! 

He’s doing a lot of drawing lately as a calming/coping mechanism.  At the same time, he is slowing down on the video gaming, which usually makes him end up feeling more anxious. He keeps his own schedule, makes his own plans, and even sets up his own appointments. He is driving his life forward academically and socially, and even politically. (He just participated in his first political protest with some kids from his high school). He now belongs to two clubs that meet after school; one that he created, and now a Computer Science Club.  I am just the chauffeur and giver of money. 

So as the boys transition, I think it’s also time for me grow up too. There is a pull towards something more than making motherhood the center of my universe. I have the crazy mind of an artist. I feel a certain degree of gravity pulling me towards more creativity in my life. I have scratched this itch with writing this blog during those busiest years of raising my teenagers. I reaped the reward of expounding my creative energy while also having my own therapeutic outlet. Now, there are a few other creative projects that I would like to explore. 

The role of mother, wife, my mother’s daughter and caregiver, continue to command a great deal of my energy. However, with Red out of the house, things are a little more quiet for longer periods of time (in-between the phone calls, that is.)

The peace is allowing my inner voice to speak to me more than ever.  I'm starting to think of myself more as an individual with dreams, hopes, ambitions, likes, and dislikes. 

I am spending more time inside my head (which sometimes can be dangerous). I have to admit, I spend  a lot of this time beating myself up with negative self-talk about what I am not doing or achieving, instead of celebrating what I have accomplished. I realize there are still countless things-to-do, but I spend a lot of time juggling them all around in my mind until I feel overwhelmed.  Ultimately, I end up achieving a microscopic amount of my full potential.

Eventually, I find myself falling back into the habit of doing all of the things for all of the people;  running them around to their appointments instead of tackling the little projects I want to complete for myself. I’ve been doing that for so many years. It’s not easy to lose the habit.

I have caught myself a couple of times being asked to rearrange my appointments or plans, in order to take care of my family's appointments. Uh, uh. It's not happening! I'm learning to take care of myself. If I fall apart, they're all screwed. 

One of the thoughts I beat myself up with is how much time I waste in a day.  My therapist and my closest girlfriends remind me, that I deserve some downtime after being completely stressed for so long. However, the quiet self-reflection makes me I feel like I’m spending a little too much time standing around like a deer in the headlights. Um…which way should I go? Instead of just moving …forward. 

In quiet moments, I think about all of the parts of myself that I have let go of in the last few years while I was swimming in a pool of crazy with Red. His last two years in the house were hellacious -with one disruption and eruption after the next. If he wasn’t fighting with his brother, he was fighting with my mother. If he wasn’t fighting with my mother, I was diffusing things between him and his father. It was a constant expulsion of energy!

Recently, a post came up in my Facebook history that I wrote a year ago, "Excuse Me While I Go Left" .  The following day I wrote  "The Script."  After reading both of these I thought, how did I NOTcompletely lose my mind? How did he make it to the age of 20 without either one of us being arrested? 

As the dust has started to settle, and the fire after the war comes to a smolder, I reflect...

You made it through one of the most difficult battles of your life. Now, what do YOU want to do?

Better yet, you spent years erasing the essence of yourself. What are the things you DO NOT WANT to do anymore?  

I put together this list -the new philosophy for my life with the underlying mantra, “Take care of Me.” 

I will not say the automatic yes. 

I will give myself time to think about it, and say NO when that is the right answer. 

I do not want to consistently put anyone else’s needs and wants ahead of my own.

I will pay attention to my thoughts and follow my instincts.

I will make myself my priority.

I will listen to my body when it says, “I need rest, exercise or to see a doctor.” 

I will not waste time with people, just for the sake of being around people.

There must be an emotional, spiritual connection. If there is no connection, I need to move on. 

I don’t want to waste time …period. 

I want to live my life with intention and purpose. 

As a part of that intention, I will relax without guilt. 

I will enjoy the sound of the birds singing outside of my window.
I will sit and just enjoy the breeze and the feel of sun on my skin.
I will stop and take a selfie of my silver hair and share it whenever I want to! I earned every last one of them. 

I will smell the roses. 

I will just be …as often as I possibly can. 

I want to see the ocean -often. 

I want to create memorable experiences. 

I want to be in service to other parents who are walking with me and behind me on this journey of raising special children. 

I will take the opportunity to make life better for someone else, but not at the expense of my own life.

I want to live each day creatively. 

I will savor every quiet moment. 

I will make my home a sanctuary. 

This philosophy is a work in progress, as I am. I give myself credit for doing a better job of taking care of myself.
I now go to *yoga and therapy regularly.
*Lies. Haven't been to yoga in two weeks! I'm going back! I swear! 
I bought and am actively using a Passion Planner to keep myself focused on my personal/creative desires, as well as the work of taking care of my family.
I continue to work on showing myself the same kind of love and compassion that I have shown my children for all of these years.
I am making myself a promise to work hard at following my own advice. I hope that you will join me.